Re:adenocarcinoma

My urologist didn't suspect cancer, originally. They thought it was a cyst on the top of my bladder. I was young, did not drink or smoke, no cancer history in family.. So the surgery was to remove the cyst, which later turned out to be a tumor. Remember this was 16 years ago, so the Internet wasn't much help, there was very little research done on this type of cancer, that could be found anyway. It was a stage 3 or C tumor. Clear borders and no involved lymph nodes.

I live in southern California. My tumor was sent to. Tumor board at UCLA, they had some suggestions about chemotherapy and radiation, then I went for a second opinion at USC, which was a joke. They wanted to remove the whole bladder and re reate one out of my intestines. Needless to say we decided to go with UCLAs suggestion. My oncologist was amazing! He explained everything to me, and I felt pretty aware of what the risks and benefits were. I was young and had two small children - I had to do whatever possible!

I had radiation and chemotherapy, which was not fun, but not unbearable either. To be honest, I can't remember most of it. I had chemotherapy for one week each month. One night in the hospital and the rest at home through a portable pump I wore around. I was pretty sick during that week, but the other 3 weeks I was ok.

I think you should take your test results, scan films, and whatever else you have to another doctor. There has to be something they can do!!!

god bless you both..

Hello dzkimmi and Catherine

your post dzkimmi was music to my ears - last week I was told there was no hope of treatment only palliative care - yet it sounds like we have the same problem - primary urachal cancer that has invaded the bladder - wow 16 years. Do you mind me asking who administers the chemotherapy?

My situation is somewhat different in that surgery (the gold standard treatment for UA) has been ruled out - so only chemotherapy and radio therapy were left as alternatives - these two were ruled out due to a lack of established protocol - I was willing to try and experiment - but my oncologist was not stating that it would make me much sicker in the short term and would not cure the cancer anyway or even shrink it.

Not the answers I was expecting to hear - so now I am investigating alternative therapies as I can't accept that nothing can be done - I can't resign myself to sit around and wait for the inevitable.

I agree that faith can make a huge difference - other questions comes to mind - can you recall what the grade of the tumour was at the start and how quickly did you have the operation?

Catherine - how are you? My Mum had a bad fall - she is quite frail - but strong in spirit and always trys to be cheerful - though as you might imagine my family are devastated as they digest this latest development.

take care to both of you - hope you are having one of life's better days

dixie

I had adenocarcinoma of the bladder, urachal origin. Not sure if that is the same as what you have. I am a 16 year cancer survivor and I wanted to offer you some information, and some hope!

Mine was further along when caught. I was stage 3. The tumor was on the top dome of the bladder, and had worked into the bladder. I had surgery to remove that portion of the bladder (clear borders). Lymph nodes were clear. I had 6 weeks of radiation and 6 months of chemotherapy. Cistplatin and 5 FU, and then switched to Carboplatin and 5FU.

I have been cancer free ever since! I pray a lot, and I think that has helped me stay positive and fight. I refused to give into the cancer, and it has stayed away!

I have had a few negative affects from the treatment, but nothing horrible. I am able to do everything I choose. I cant hold my pee very long, and thats probably the worst affect. Not like I have to run to the bathroom all day long or anything, but i cant hold it as long as I could before.

If you have any questions, please ask